Archive for ‘Doctors’

August 2, 2011

Am I a hypochondriac?

by Living with RSD: what comes next?

I had an appointment with my pain management specialist today. I was dreading this day because I knew how the conversation would go. Right before a holiday, I had an episode with my device. It was malfunctioning and didn’t seem to work. I had shocks every 10 minutes going up to my head. When I went to get the devices reprogrammed, the device rep told me that two leads were burnt out. He didn’t know why. That was 6 weeks ago. I’ve been dreading this day ever since. I knew that that episode would spur a number of questions that I couldn’t answer.

So, tonight I have a fistful of prescriptions, tests and appointments to schedule. Ultimately, I know that I’m okay. But, here’s another series of CT scans, blood tests and neurosurgeons. It’s the great catch 22 at the doctors. Do you keep your mouth shut or do you let them know what’s going on? And, if you do tell your doctors, what do they think? In my heart, I just want one week without a doctor’s appointment. I want to be able to spend that time with my kids. Instead of less appointments, I have more. And, I really do wonder sometimes, am I a hypochondriac? Is this some sick cry for attention that I really don’t want? After awhile, you hit a point where you start to question yourself. I have some comfort in thinking that really hypochondriacs wouldn’t question themselves…or would they?

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June 19, 2011

Audrey Hepburn wore flats, so they can’t be that bad

by Living with RSD: what comes next?


I’ve had some challenging days behind me now.

I began a new round of physical therapy focusing on proprioception and desensitization. My physiatrist wants me to focus on reducing the impact of the RSD and to stop falling. All great goals, but I can’t say that I’m too optimistic about them. You see, as part of my real 90 day challenge to myself, I wanted to explore how to deal with the long lasting impact of RSD on my own. Not to be in therapy anymore, but life took a different turn. The most challenging of it all was to hear the therapists impression of me. A very unrealistic expectation was that they would say everything is okay and I don’t need therapy anymore. No such luck. Not only did I hear promises of “we (I) can do better”, they took away another one of my great pleasures. Yes, it was time to address the shoes. Now, in all fairness, I hate my shoes now anyway. A collection of ballet flats, which are nice on low key days, but no fun when you have parties and work to go to. I was being good by wearing those. But, the ballet flats aren’t even good for me. Stability sneakers that is a fancy word for orthopedic looking shoes. These days, they have really nice ones. It wasn’t realistic of me to expect any different recommendation. $200, which blew my budget, for the shoes, orthotics, and socks to go with them. I could have a really bad ass pair of heels with that money. Plus, they made me recycle my toners. The toners are bad for me, but I spent $90 on those. So, total out of pocket cost was $300, not to mention what it cost my heart and soul.

To top it off, the PT discussed the use of a cane. My immediate, more guarded response, was no. I was thinking of the more appropriate “hell to the no”. I’d love to be the role model of someone who is handling the disorder, taking care of business. Instead I shot down the recommendation from any further discussion. The last time that I did this was when they recommended a lower spinal neurostimulator implant to help me out with my feet. I broke my foot the next day on travel with an unnecessary fall, in some cute strappy sandal wedges. I leave on holiday tomorrow for Disney, so, if history repeats itself, I could have a big fall coming to me with Mickey and Minnie.

To add insult to injury, on the same day, my neurostimulator wasn’t working properly. In the end, it was two dead cells suspected of causing the surges and shut offs from my device. By the time that I saw my device rep, my hands were shaking so badly that I couldn’t hold my device in place. I had to hold onto the walls to walk down the hallway. My original pain management specialist came into check on me. He wondered why I hadn’t seen a neurologist to check on all of these symptoms.

So, if we’re really looking closely, in this 90 day challenge, my goal was to move away from traditional medical treatment and closer to a less invasive Eastern Reiki treatment. I had hoped to document the impact of that. Instead, I have seen another orthopaedic (for my back), plastic surgeon (for breast reduction for my back), physiatrist, new round of physical therapists, three different device reps with two emergency reprogramming appointments, radiologist for a CT scan of my ankle, and a recommendation to only where stability shoes, walk with a cane and see a neurologist. I think that I have movement the opposite direction of my goal.

Here’s what I think that I might be missing. May be this is moving towards my goal. I wanted the rest of my life. May be this is it. Balancing my job, my family and now my evergrowing medical team. What is missing in that, for me, is my life. What happened to me? I’m getting lost in sea of treatment.

May be I’ll find it next week at Disneyworld. It’s the first time off in some time that doesn’t pertain to doctors. It’s just about me. It’s nice to remember me. I never thought that I’d say that it was my goal to be in those ugly ballet flats, but I do miss those. After all, Audrey Hepburn worn flats too, so they can’t be all that bad.

I’m still not using a cane!

June 14, 2011

The case against Google

by Living with RSD: what comes next?

I love Google. I spend most of my work day, and life, using it to find the right answers, but, to be completely honest with you, the last few days have been pretty tough on me. You see, I made the mistake of googling my medical prognosis and options. I didn’t like the list of choices presented to me. I’ve been trying to stay positive, but it’s just emotionally draining to stay that way.

You see, my foot has not been healing properly. I broke my foot and sprained my ankle 10 months ago. It has not healed, after 3 months of staying off of and physical therapy. I had a CT scan, with and without contrast, yesterday. It made me feel utterly exhausted. I don’t know if it was a reaction to the contrast, or if it was going NPO while on meds, but I couldn’t keep my eyes open. I even left work a little early, which is a big deal to me since I am limited on leave. It may be not being able to read the results and then having to wait for the interpretation. Even though I should know better, I googled what the results could mean for me. I’m not sure that I am happy with any of the choices.
1) My best case scenario is that my ankle just needs more time to heal. I start another round of PT on friday, which brings my new total up to 5 months, to work on my proprioception and desensitization to get the RSD under control.
2) A slighty more aggressive approach would be to boot and/or cast my foot. If the ligaments are loose and just need more time isolated, this might give it the opportunity to restrengthen it. This would also put me out of the exercise classes that I love so much. But, would trigger a worse RSD response in my foot.
3) My final option is a surgical repair for my foot. This would also involve 1-2 because it would add more PT and might result in the boot. Also, a very nasty RSD response. I’ve read that this might also involve another injection.

I was looking for more freedom in medical decision making and more liberation to start the rest of my life, but it feels like that control is being taking away. My choices are all ones that I don’t want, but doing nothing is not a realistic option. You see, I keep falling. One of these falls resulted in a repair of my original spinal neurostimulator. I’d like to say that it wasn’t because of the fall, but I just don’t know. Why I know is that I am moving farther away from the cute shoes and closer to the flats and hightops that I’ve been trying to avoid.

All this right before I leave for Disneyworld. I wanted the kids to have a trip where they would see that nothing has changed, but it all has. I can’t ride the rides with them. I don’t have the energy to walk them around all day. Now, I might need a boot to be able to do that. I know it might be the right thing to do, but I’m not happy with it. If I were to consider this under the guise of my body budget, I would say this puts me at a lower level for today. I really wanted to be higher. And I really wanted to get back in my “big girl shoes”. I suppose that I shouldn’t feel down about decisions yet to be made, but easier said than done. May be tomorrow…may be instead of googling medical decisions, I need to start googling some cute shoes. Chanel has some great flats. Target is closer to my budget.

May 28, 2011

Don’t pity me

by Living with RSD: what comes next?

Please don’t pity me. I went to the doctor’s yesterday. The appointment didn’t go as well as I would have liked. I thought that I could be done with doctors for some time. No such luck. I need a CT scan for my foot, a trip to the physiatrist and even more rehab. My back is in spasm, my CRPS is still not being managed well and my ankle and foot that was broken 9 months ago is not healing. I’m not happy with any of these things, but please don’t look at me with pity. In addition to the doctor, I saw my device rep for reprogramming. Gone are days of quick appointments. I was in the doctors for 90 minutes, but please don’t pity me. I watched the man who programmed me. He was very kind and helpful, but he looked at me with pity. He saw me as an individual with RSD. Not an individual. I fight to remember who I am through all of this. I want to be a role model for my kids. I want them to see me and forget that I’m not normal. I don’t want them to know all of the things that I can’t do. My life is hard enough. So, please don’t pity me. I can’t get dressed up because it hurts. I’ve had to cut my hair, put all of my cute shoes in the closet, give up running, buy a new car. I can’t cook a nice meal. But, please don’t pity me.
And here’s why. I know that I have RSD. I fight it every second of every day. I don’t need to see it in your face. I struggle with my loss. I know that it’s not fair. I know that my prognosis is not good, but I don’t need to see that in your face. Don’t pity me. If you pity me, I realize that it’s a lost cause. When you pity me, I don’t feel like myself. I feel like I am just an individual with RSD. But, I am so much more. So…please don’t look at me with pity. Look at me as someone on my team. Look at me like you’re going to make things better, even if you can’t. Look at me like there is something worth fighting for and that I’m not at the end of my rope, the end of my treatment. Look at me with compassion not with pity.

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May 1, 2011

Love and Drugs and my pharmaceuticals

by Living with RSD: what comes next?

I just saw the movie Love and Drugs. If you haven’t seen the movie, I won’t spoil the plot. However, I will share a smaller part to the movie. Pharmaceutical companies have incentive programs for doctors who prescribe their medications…in the movie. It got me to thinking about the 5 prescriptions that I am on. How many are entirely necessary?
I’ve been reading a few books that talk about natural supplements in the place of pharmas. It also talks about the prolonged exposure to chemicals to your body. Some of my medications are necessary, but are they all really. I believe that it’s not enough to focus your recovery on the medical community. That is one valuable component. What’s missing for me is the recovery for my heart and soul. It’s hard not to let your spirit get down. Until I get my spirit in balance , I’ll continue my medical recovery.

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April 14, 2011

Shoes in Holland

by Living with RSD: what comes next?

I don’t remember the shoes that I was wearing when I had the car accident, which is funny for me. I’ve always been about the shoes. Growing up, I never did try on my mother’s shoes. I wanted to tell my own story. When I got married, I had beautiful white Kenneth Cole Mary janes¬†with a sturdy heel since I would be on my feet. For all three of my surgeries, I wore my brown knit Uggs. My comfort shoes. When I broke my foot, I had cute Italian brown leather wedge sandals from J Crew. I was traveling in Santa Monica for business. Some people build their outfits around items of clothing. I build them around my shoes. I have RSD, or Complex Regional Pain Syndrome, in all four of my limbs. To manage the pain, I have two Spinal Neural Stimulators that have been implanted in a series of three surgeries. I take daily doses of nerve medication and supplements to manage pain. At this time, I also have PT twice a week. My team of doctors include a pain management specialist, my general practitioner, a neurosurgeon, an orthopedic and the team of physical therapists that torture me on a weekly basis. I could dwell on the inequity of life, how bad things happen to good people, etc. Really, I think mostly about the shoes. I am reminded of the poem, Welcome to Holland
Sometimes, life isn’t what we thought it was going to be, but that doesn’t make it bad.
So, my journey begins now. How to deal with the ever after. There are two pairs of shoes that I miss the most. My prized black patent leather Manolo Blahnik¬†Mary Janes and the running shoes that I wore for my first marathon. I don’t know if I’ll ever get back into those shoes, but I have hope. May be it won’t be those. May be there are new prizes ahead of me. I hear that Holland has those cute wooden flats.